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Thread: Robert Update. (warning loooong post)

  1. #1
    Karen J is offline Shares Widely And Frequently
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    Default Robert Update. (warning loooong post)

    Hello all, I thought that instead of throwing updates in among my replies to other threads that I'd start a thread here for my LO.

    I have some mixed news for my first official update here. The best part is the news that apart from one thing, Robert is strong enough to come home. The one thing stopping him is eating. The problem being that, a lot of the time he seems to be struggling to get the knack of the swallowing part of eating and so, panics at the beggining of each feed, this causes his heart rate to drop to a dangerous level and he needs help to get it back up again.

    He's had some basic tests so far and they can see nothing wrong with him apart from a mild case of reflux that they don't want to treat. I have to say this annoys me as, mild or not it would make sense to eliminate even the smallest thing that might be giving him trouble. DH and I have brought this up countless times and they don't want to budge on that one.

    Over the weekend we were told there was a good chance he would be coming home with a g-tube if things didn't improve soon. A g-tube is a feeding tube that they insert directly into the stomach wall that would go in through a small opening in his tummy. Looking this up for more information, I've read that it can lead to skin infections, leakage of stomach acid and skin irritation from the stuff they use to treat the above two problems. Neither I or DH want to see him go through all of this. He's been through such a lot already including; three infections, two spinal taps, five blood transfusions and and surgery to correct his PDA.

    We're working hard to find something that works for him regarding feeding by mouth. The hospital staff were feeding him swaddled and lying on his side. He doesn't like his arms restricted, so we unswaddle when we feed him, he has mild reflux so we don't feed him lying down. On monday we tried him with a Dr Browns bottle because he also has a herniated belly button that they don't want to treat despite us having said that it seems to make it harder and more painful for him to pass gas. <mutters and grumbles here> So, armed with our new ideas we tried all three on him monday and he took an entire feed by mouth with no problems.

    Now the hospital are using our new system and he seems to be making some progress. He isn't taking every feed well yet, but he's doing a lot better and things are looking very promising. I've had to put his nursing from me on hold for now as the lying down and eating really does seem to freak him out. But he's still getting breast milk so I can live with that. I'm still having my supply issues but I'm getting tested for hyperthyroidism and hormone problems on tuesday to see if one of those is my problem. The hospital LC's think it could be very likely as I've tried everything I can to increase my milk to no effect. In the meantime, I'm pumping like a crazy woman and storing up every ml I get for when Robert comes home, which could be a soon as a week from now.

  2. #2
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    Default Re: Robert Update. (warning loooong post)

    Wow I'm glad that Robert might get to come home soon.
    then you can relax a little bit!
    Have you talked to your local leader? She maybe knows somebody that had been in the same situtation, and could offer a little bit of mother to mother support.
    Sometimes babies just figure out how to feed in their own time.

  3. #3
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    Default Re: Robert Update. (warning loooong post)

    Wow, it sounds like everything is coming together. We had the feeding problems as well, and found that treating the reflux and only feeding breastmilk - without any fortifiers or formula - were what made a world of difference.

    A few things I'm thinking about - not sure if you thought of them and really I'm just going to ramble off the top of my head to see if anything helps, so please excuse me if you have thought of them. Have you tried Avent bottles? They were what we finally settled on after tons of others. Be sure to use a Preemie flow nipple, a fast speed may scare him or be too hard to tolerate (I know our NICU wanted the faster nipple because of time). For us, smaller feedings more often worked better (again, the nurses don't like this because of time constraints, but it worked for us). We didn't treat the hernia either, although I have to say (and please don't quote me, it's not scientific and I'm not a doctor) I started to push it in after awhile because I was sick of looking at it and it healed a few days later. I thought it made it easier for her to get the bubble out if I pushed it back into the works, so to speak. Definitely sitting up while eating and for at least 20 minutes after will help with digestions and reflux, plus stopping often to burp.

    Good luck and it sounds like you should have your little guy home with you soon.
    If you obey all the rules, you miss all the fun. - Katharine Hepburn

  4. #4
    Karen J is offline Shares Widely And Frequently
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    Default Re: Robert Update. (warning loooong post)

    Today Robert had a barium swallow (sp) test to check for anything physical wrong with him that could affect his feeding. Me and DF heaved huge sighs of relief when the results showed nothing wrong apart from the mild reflux mentioned earlier. We asked again if it should be treated and the doctor explained that it was so mild in his case that there was no chance it could be the cause of his eating problems. He thinks it's just a case Robert being a little behind on getting the whole suck-swallow-breath thing co-ordinated and, that it's just going to take some more time. He was actually glad we were against the g-tube to get him home sooner. He said that personally he doesn't like to send babies home with one unless there's no other choice. More sighs of relief for Mum and Dad, there.

    So basically it's all down to a little more time in hospital for our little boy. He's slowly but surely making progress. He did really well tonight, taking all but 15ml of his evening feed by mouth. He's on a slow flow nipple and still sitting up for feeds, we've taken your suggestion of burping often and it seems to be working great, thanks for that kst.

    As for finding support from another Mum of a preemie, my Mum has been fantastic. I tell her about my own fears only to find out she felt exactly the same when, going through the experience with my youngest sister. I can't tell you how much it helps being able to talk about it with someone who's been through it all too.

    Now it's just a case of getting through the home stretch. I have to say, it's been that long coming now that, I have a feeling I'll actually enjoy those sleepless nights if only because I'll be the one helping him through them, instead of a nurse. Can hardly wait to be a full-time Mum.

  5. #5
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    Default Re: Robert Update. (warning loooong post)


    Karen,

    Just wanted to share that even though we did not have the same feeding difficulties as you, we did have some and had great luck with Dr. Brown's bottles (preemie nipples).

    One thing that our son had that was not diagnosed until he came home was a dairy allergy! When he was released from the NICU, the neonatologist at the hospital recommended he get a high-calorie formula supplement daily to help with weight gain. For me, it was always more important for him to thrive than for me to BF. BUT, we quickly realized he was having an allergic reaction to the milk-based formula (vomitting and severe stomach cramping - not fun on top of his reflux).

    He's 10 1/2 months now and doing much much better and is exclusively bf!

    Hang in there!!!

  6. #6
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    Default Re: Robert Update. (warning loooong post)

    Karen,

    I don't have anything new to offer or suggest. But just wanted to send you big hugs!

    And still, I am praying for you, your dh and that sweet baby boy. You all need to be home so you can get the hang of the full time mommy thing. You will love it!

  7. #7
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    Default Re: Robert Update. (warning loooong post)

    Hi Karen!!!

    If you need any information on a G-Button/Tube, LMK, my DD has had one in for almost a year now. They are not as bad as you think when it is first put in and it becomes second nature taking care of it and the site.

    We had horriable Suck-Swallow-Breath problem for about 3 months, every feeding her heart rate would drop and she would turn blue. It takes them a little bit to get that down. We were released with a apnea/cardiac moniter from the NICU and I can say, it saved her life more than once.

    Just a side note: Reflux can cause the heart rate to drop as well. What happens when baby refluxes it can hit the vegal (spelled wrong) nerve and that will cause the heart rate to fall. Her low heart rates and apnea episodes were all caused by silent reflux (refluxing but not spitting up). The bad thing about a swallow study, it only shows a small window in time for reflux episodes, we had many of them done (swallow studies/Upper GI and GI Sonograms) showing from slight to sever reflux...just keep that in mind.

    The belly-button hynera is actually quite common and will usually go away with some time. She had hers for 6 months and it finally corrected itself, none of the doctors wanted to do anything with it either (and I'm glad now that they didn't).

    This is a great place for support and hope that little Robert realizes that he needs to breath after swallowing!!!! Good Luck and if you need anything, just LMK.

  8. #8
    Karen J is offline Shares Widely And Frequently
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    Default Re: Robert Update. (warning loooong post)

    You Ladies are lovely, I wish I could give you all in person, your support here has been such a help.

    Here's another update. We were supposed to have begun the feeding study yesterday, but the specialist wasn't able to get away from his other duties to do it. He needs to be there to observe Robert for every feeding over a 24 hour period. Both me and DH felt incredibly let down as it has been scheduled for two weeks and, it felt as though we had been strung along with this for over a month by then (The study had been in the works that long). The NP told me about the cancelled study and asked if we would be willing to wait another month to set up a date for a new one. I think he could tell from the look on my face how I felt about that. He talked about a g-tube again and I reminded that DH and I were keeping that as a last resort only. At this point something happened that never has before. Robert suddenly started crying, not a big thing in itself, all babies cry for various reasons. But this time he actually had tears in his eyees for the first time. I picked up my little red rimmed eyed boy and he looked at me with such a sad expression on his face.

    Anyway to try and cut a long story short, the NP left to give the news about the study to DH who was at work and I stayed with LO who from this point on screamed and cried everytime I left him in his crib to do my usual things in his room, put away his clean clothes, grab my water and book from a bag etc. Then, as soon as I would pick him up, he'd calm down and just give me this sad baby stare. We spent some time just watching each other, I talked to him, asking him if he wanted to come home and so on. And as odd as it sounds, I really feel as though he was answering me. Just from the way he was behaving and the way he was so focused on me. It seemed like he was telling me how sick of the hospital he was and how he didn't want nurses he just wanted him Mum and Dad and to come home now.

    I'm a Christian, but I've always been fairly shy about talking about it and such. Sort of keep it to myself a lot of the time. I was feeling pretty desperate for a bit of guidance so I asked for a sign of some kind, just to tell me if going home with a g-tube was the best thing. Robert would only sleep a few minutes at a time, he mostly cried and then watched me really closely. When DH arrived I rushed off to borrow the hospitals pump, when I had finished and was leaving the pumping room I caught sight of the sign I was looking for. Opposite the hallway was a baby girl all dressed up in her going home outfit, surrounded by her family as her father sat her in her car seat to go home from hospital.

    So, Robert is coming home very soon. As soon as we can get the g-tube in which they are going to be doing their damndest to schedule for next week. He'll need a few more days after that to heal up, and then it's home at long last for our little darling boy. It feels like a massive weight has been lifted off our shoulders. Despite still feeling a bit nervous about the g-tube, I'm so happy about him being home soon that I can hardly sit still. And, I'm looking forward to finally being able to add a picture of Robert to that Going Home picture thread.

  9. #9
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    Default Re: Robert Update. (warning loooong post)

    So glad to hear that you're going to be taking that little boy home! It may not be how you originally wanted to, but who knows, maybe while at home he'll do so well that you won't need the tube for long.


    ~Meg~
    Wife to Ray (09/07/07)and Mama to:
    Xander (01/19/07) nursed for 30 months
    Liam (12/12/09) still nursing through the night and in the mornings!
    Sebastian (7/29/12) my newest little nursling who graciously shares his milk with big brother!


  10. #10
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    Default Re: Robert Update. (warning loooong post)

    Quote Originally Posted by Karen J View Post
    I'm a Christian, but I've always been fairly shy about talking about it and such. Sort of keep it to myself a lot of the time. I was feeling pretty desperate for a bit of guidance so I asked for a sign of some kind, just to tell me if going home with a g-tube was the best thing. Robert would only sleep a few minutes at a time, he mostly cried and then watched me really closely. When DH arrived I rushed off to borrow the hospitals pump, when I had finished and was leaving the pumping room I caught sight of the sign I was looking for. Opposite the hallway was a baby girl all dressed up in her going home outfit, surrounded by her family as her father sat her in her car seat to go home from hospital.

    So, Robert is coming home very soon. As soon as we can get the g-tube in which they are going to be doing their damndest to schedule for next week. He'll need a few more days after that to heal up, and then it's home at long last for our little darling boy. It feels like a massive weight has been lifted off our shoulders. Despite still feeling a bit nervous about the g-tube, I'm so happy about him being home soon that I can hardly sit still. And, I'm looking forward to finally being able to add a picture of Robert to that Going Home picture thread.
    You are in big trouble! You made me cry! I can't wait to see his going home picture. Congrats on being so strong, and making it so so far mama!
    “Only with trust, faith, and support can the woman allow the birth experience to enlighten and empower her.” - Annie Kennedy & Penny Simkin

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